Epilepsy in Young People
Seizure alert dogs
Seizure alert dogs are assistance dogs trained to detect the signs of an epileptic seizure in their owner, before it happens. They warn their owner of a seizure by barking, whining or jumping, giving the person enough time to get to a safe place. The dogs can give their owner an accurate warning between 20 and 45 minutes before the seizure. Seizure alert dogs are usually only given to people with poorly controlled epilepsy with ten or more tonic-clonic or complex partial seizures per month, and who haven't had medication changes for six months before they apply.
Quite a few people we spoke with had never heard about assistance dogs for epilepsy. A few said they were interested in either having a seizure alert dog or knowing more about them.
One man said that, although he was interested in having a seizure alert dog, it would be a 'last resort' because he didn't feel responsible enough to look after a dog. He was also concerned that an assistance dog might limit his social life and relationships. Another person was worried that the criteria for having an assistance dog might be too strict for her to be eligible.
We spoke to one woman who'd had a seizure alert dog for five years. Holly has had tonic-clonic seizures since she was 18. She'd tried many different types of medication but none controlled her seizures. Her GP suggested applying for an assistance dog. Holly was initially meant to have a seizure response dog, who gets a person to a safe place after a seizure and seeks help. But it turned out that Elvis could in fact warn Holly before she was about to have a seizure.
After Holly had had Elvis for a few weeks, she realised he was barking every time she was about...
I've got Elvis in the summer before I started my PhD and things have been really very different since then. So Elvis is a wonderful dog and he was going to be a seizure response dog. So the idea was going to be that Elvis would, when I spontaneously started break dancing at inappropriate moments, and he would know that would be a bad thing, and he would then go and get help. I've got like a panic button, so things like that he would press, and he would bark a lot and make a bit of a hoo-hah, and just go and get help. So that would be good and that would help make me feel safe and that would be a good thing.
I'd had Elvis for about six weeks and he started barking once and he was sitting at the bottom of my chair and he barked, and I'd never heard him bark before so well I didn't hop down, more like I leapt down, off this ridiculously high chair, and then I had a fit. And that was really weird, I didn't know anything about it, and everyone just thought, oh, didn't really think anything of it, just did what they have to do when I have a fit. Then over the next two months I must have had I don't know, six fits maybe, and it became obvious to everybody around that Elvis was getting agitated and then barking before I'd have a fit, and it got to the point where I even remembered it, which means that Elvis had barked five or six minutes before I'd had a fit.
So we talked to the support dog people about this, and they were just like, 'Oh well that's incredible. Do you think he might be intuitively telling you?' And I was like, 'Well yeah, that's what I'm saying.' We went up and had residential stuff and, yeah he was really, really good at it and just through everybody around him giving him lots and lots of positive reinforcement when he told me I was gonna have a fit, then he just got better and better. And it got to a point where Elvis could give me 15, 20 minutes warning before a fit, and that was great 'cos I could phone somebody, I could sit on the floor, or lie down with a cushion under my head, not to be in the bath, you know, the idea that I could even have a bath was like a new thing you know, because Elvis would be able to tell me it.
Each seizure alert dog is trained with its new owner so that they can learn to identify the owner's specific seizure activity. It is not clear how the dogs can identify when a seizure is about to occur. It is thought they may be picking up on unique signs of seizures' physiological or behavioural changes that the people themselves and those around them are not aware of. This could include pupils dilating or changes in facial expressions or colour. Seizure alert dogs are selected from rescue centres and go through a long training process - first in a specialist training centre, then in a foster home and finally with their prospective owner.
At first, when Elvis gave Holly a warning, she would get herself to a safe place and Elvis would press the panic button to call the ambulance. A doctor whom Holly saw only once at A&E, suggested that when Elvis gives her a warning, she should take medication to prevent having a seizure altogether.
When Elvis gives Holly a warning, she injects fast-acting medicine into her gum with a syringe....
Like any assistance dogs, seizure alert dogs need a regular pattern in their life. This may mean that the owner needs to adjust their lifestyle.
Holly describes her typical day with Elvis.
An average day, we've got a pretty much like a desk job I guess, sometimes I have meetings and things, and soon we'll be travelling a little bit more but I don't know how that's gonna work out yet. He entertains everybody in the office, keeps everybody on their toes and he just looks after me I guess. And lunchtimes I'll take him to the park so he can run around with a toy, use the facilities as it were. Then we go back to work, work the afternoon, and then we walk all the way home. In the evening, sometimes it can be a bit difficult with Elvis, he's a creature of habit, and he likes to be fed at certain times, so it takes a bit of planning. If I know I'm gonna go out of an evening straight from work then I need to make sure I've taken food into work so I can feed Elvis. I've been caught out on that before that I've thought that I had spare food, see my desk drawer's a little bit different to everybody else's so I've got all the dog's toys, and poo bags, things I need for walks, and there's another one that's like dog food, and the other one is dog bowls. You know like most people have staplers, envelopes, you know. They're Elvis' drawers so I got caught out once that I had forgotten that I had given him all the food that was there, and I hadn't bought any more in. And it's not fair to then drag him to a cocktail bar or a pub or something and make him sit there until like 9 or 10 at night, he's not been fed and well he wouldn't stand for it anyway I don't suppose. So I've been caught out before and I've had to rearrange my plans to meet them later or just cancel them 'cos I've had to come home and feed him which is a little bit annoying.
Holly describes how she and Elvis sometimes clash over their preferences in music, going to...
I didn't take him to New York with me because he can, like he's injected, he's got passport, he's allowed to do what he likes pretty much, well as long as he's accompanying me. I think in that way I'm his assistance person [laughs], 'cos without me he wouldn't get to do any of these things. I didn't [take him to USA] because I figured I was only going to be there for four days, and it was such a long flight and he has to go through so many horrible vet things to get to America and security. Getting into the US is difficult enough with security without a dog, and I didn't want them putting gloves on and checking Elvis. I thought you know he doesn't need to go through all of that. But then at the same time I didn't want to miss out on the opportunity of going to New York and speaking at this incredible conference so it kind of felt a bit, there's a bit of conflict there as to what I should've done. With the benefit of hindsight maybe I should've just put him through it, I don't know, but he had a wonderful time.
A seizure alert dog can change the owner's life completely and give them independence that might not otherwise be possible. Holly said it was only because of her dog that she could live on her own, go to work and live a completely independent life. Holly says Elvis has changed her life and is 'worth his weight in gold'.
Any assistance dog is a big responsibility and needs 24-hour-care. For the dog to be able to do its job properly, it must constantly be with its owner, day and night. This can bring extra pressures and restrictions to the owner's life.
Having Elvis has enabled Holly to live independently but has brought some new pressures and...
But now I have a this dog, who is not always the best behaved dog, or well he's not on duty at the moment so he has different levels of obedience, and at the moment he's showing none. He's a big dog and he takes up a lot of room and he needs looking after, sometimes you know when you've been very, very ill, sometimes it can be difficult to look after yourself let alone then have the responsibility for looking after this living breathing moving creature that is completely dependent on me. So whilst I'm completely dependent on him, it's kind of mutual, because he needs me to feed him and walk him, and pick up his poo. Which I do gladly because you know he's just lovely but you know there's this whole new pressure in my life and I don't want to talk badly of Elvis, partly because he's here, but also because he's great but he's also a restriction.
Holly gets a lot of questions from people about Elvis and finds this nosy and rude because it's...
And I think as well, I guess there is something in me that you just want to be nice and coming back with maybe a witty or a rude response isn't being nice, it doesn't make me feel good, when I don't tell people, and it doesn't make me feel good when I do tell people either. I feel like I'm sharing things that I don't want to share or I'm being really rude and there doesn't seem to be a way to win and to feel good. Rather than changing the whole of society's attitudes, somehow you know teaching everybody that it's inappropriate to ask such questions but that's a pretty difficult thing to achieve really. I don't know. But he's definitely worth his weight in gold, and that's 30 kilograms, that's a lot of gold [laughs].
I just don't think that people realise that when they're asking me what Elvis does they are asking me to tell them that I have epilepsy and that he's a seizure alert dog and that's quite a lot of personal information for you to be giving to somebody who you don't know and might not want to know. I certainly wouldn't want to know them because they're clearly really nosy, rude inconsiderate people, but that's kind of a bit odd, that every encounter that you have pretty much with a human being, Elvis is also part of that encounter, and whilst that's nice because at least I don't have to go through life by myself, people keep saying, Oh he must be wonderful company, and I'm like 'Oh yeah, I guess.' But I have to put up with all of this as well because he's very visible.
Elvis knows how to press the panic button if Holly has a seizure but he also to press it just to...
Like when I was doing my PhD at Uni, I lived with one of my friends and we both had a panic button and everything set up in there, and I was just ignoring him, not because I'm mean but because I wanted to be doing something else, and I wasn't giving him the attention that he wanted. And he looked at me and he walked over to the panic button, looked at me, and then he just pressed it [laughs], as if, 'This'll get your attention.' And it was just brilliant, I just thought that was such a clever dog, and so funny. Also because when he presses the panic button all these paramedics come who just think he's wonderful and he gets fussed, and treats galore and I think that's what he wanted. He wanted them to come, but I don't think he realised that I can just cancel it really quite easily. Just the look on his face as well that he did it on purpose. Total like, 'Right, I'll show you.' He was just brilliant, yeah and I liked that and thought that showed character and that's nice.
Last reviewed May 2016.
Last updated March 2011